Every day all day long we could ask ourselves the question, “What if?” What if love passes me by? What if I fail? What if I lived life without regrets? What if I could truly make a difference? The question I would really like you to ponder is: what if you got the news that you had a horrible disease and you only had a limited amount of time left to live out your life? How would you spend your remaining days?
This “what if” question is an interesting one to reflect on. It might even be fun (only fun if not really true) to dream and make a list of places to go, people to see and things to do.
My best friend Carol got an unwanted opportunity to ask herself a difficult question. It wasn’t “what if” but “what now” after getting a diagnosis of ALS (better known as Lou Gehrig’s disease). This illness is a death sentence as there is no known cure. Once diagnosed, the best life will give you is 2-5 years. Amyotrophic Lateral Sclerosis is a devastating progressing neuromuscular disease that occurs throughout the world with no racial, ethnic or socio-economic boundaries. ALS typically strikes men and women between the ages of 35 and 70. More than 5,000 cases are diagnosed each year; my friend Carol, age 56, just happens to be one of them.
When life stretches before us with seemingly no end in sight, we sometimes take for granted that we have all the time in the world to accomplish those things on our “bucket list.” This up close and personal journey with Carol has shown me that life is indeed short and NOW is the time to live each day as though it were our last. Live life out loud and without regrets. This is not a dress rehearsal. We need to make each day count… live it fully, joyfully, honorably.
Carol is under hospice care. She is well aware of her limited time on this earth and her physical limitations are just that… very limited. Her body betrays her and she only has movement left in her one hand; just enough to move the mouse on her computer which is her window to the world as she lies at home in her hospital bed.
Carol never got the opportunity to answer the “what if” question, but had to deal with what was real and happening. It was a lot to process. She had some tough choices to make about how she would live out her last days.
Here is what she has taught me. She views every day as an opportunity to bless others with words of hope. She has resolved all of life’s big issues, leaving no regrets of unforgiveness or bitterness. She is mindfully aware of how powerful words are and has written words of love and affirmation to those whom she calls friends and family. She is living as humbly, graciously, completely and passionately as she is able. With the help of friends, she has sorted out all of her personal belongings and blessed many people with items from her home. After life is complete she is bequeathing research dollars and leaving a living legacy by donating her brain and spinal cord as a “pay it forward” for a cure. While each day brings challenges of breathing, pain and the feeling of being trapped within her body, she engages her faith and embraces each day as a gift.
It is a grievous situation for me watching a dear friend physically diminish, knowing each time I say goodbye may very well be the last time. We are both determined to stay true to our friendship til the end. BFF’s forever! She holds the hope of heaven in her heart and each visit is a cherished memory.
Giving up your career, driving, walking and feeding yourself have all been major hurdles, but despite that, she has chosen to take opportunities to advocate for research dollars on Capitol Hill in Washington, D.C. and at her state capitol in Trenton, N.J. She is determined to make a difference and chooses to be gracious to everyone who comes into her life. Hers is a life well-lived and she will be greatly missed when she moves. Moving Day is the code phrase she uses for transitioning to heaven. I told her to make sure she reserves the mansion next door for me!
May is ALS Awareness Month. Carol would challenge you to live your BEST life now and bless others along the way with random acts of kindness and life giving words of affirmation!
Connie Schaeffer is a resident of Kutztown and enjoys reading, writing, but not arithmetic.